Saturday 10/22/11 Update (The Outcome)

We have been back in Wilmington since Tuesday night and Amanda has been seizure free since our return!!!! She has been very happy, working hard in her therapies, and seems back to her normal self. Sorry it took me so long to post. I have had a nasty case of bronchitis and have been in bed quite a bit trying to shake it. Thankfully, my parents have been helping a lot with Amanda. Thankfully, Amanda is doing just great, is full of energy, and is thrilled to be back in Wilmington. So here is the update on the UCLA findings ...

It was clear when we were out there that the doctors seemed to hope the seizures were coming from the left (her disconnected side) so that they could be fixed with surgery. By coming from the right, there will be no surgical fixes. All the information we have so far is preliminary but we heard it from both neurology and the neurosurgeon so I doubt it will change much when we get the final results. We will know if the MRI yields anything significant at that point since the MRI results weren't in when we left. She will continue on with most of her current meds although we will be switching one from a shorter acting version to a longer acting version. The good news is that since we weaned meds in the hospital to induce seizures, I now know for a fact that her personality, intellect, etc are no different on meds versus off meds ... she is the same kid either way, so that is a blessing to know.

So several people have asked if the news is good or bad and not to sound trite but the best answer is probably neither; it is what it is. Had the seizures been from the left, we would have been looking at another brain surgery this fall in a child who already has two aneurysms and blew 8 iv's or iv attempts while we were in the hospital. While surgery could have yielded the outcome of a seizure free child with possibly no medicines, it would also have been risky. On the other hand, with the seizures coming from the right, surgery is not an option and we handle things as we have been over the last several years, with medicinces. We went out there because we had to know where they were coming from to give her the best possible outcome given the information. We have done that and we now know the game plan. I feel comfortable in the fact that we have done everything we can do and have left no stone unturned. I feel peace with that and I know God is in control.

Deep down, I feel like the outcome is truly a blessing, as I really wasn't looking forward to another brain surgery. I feel like it is God's way of saying that He doesn't need outside help to heal her, that He can do that just fine on His own. It makes me think of John 9:1-3 when the disciples ask who sinned to make the man blind and Jesus replies that he was made this way so that "the works of God could be displayed in him." I have seen God use Amanda in such amazing ways already and He loves her more than we can imagine. She is clearly living a "purpose filled life." So I optimistically look forward to the days, years, and decades ahead where we can see just how powerful God is and how He will continue to use her in glorious ways.

Earlier this week, I got a call from my friend Mark who met Amanda for the first time out in LA and he told me how he shared Amanda's picture and story with a girl struggling with addiction who he was driving to a rehab facility. The girl was really anxious when she got in the car and he said that the girl really settled down and started to relax and even laughed a bit after they talked about her situation and Amanda's. Even on the other side of the country, God is using her in amazing ways.

It is all good. After all, Romans 8:28 tells us, "And we know that in all things God works for the good of those who love him, who have been called according to his purpose." I believe that down to the last molecule of my being and feel so blessed that God has given me some sneak peeks over the years as to the brillian silver lining in what some see as a cloudy day ... from Ms. M and the inmates, to the EMT, to the security guard, to the animal lady, to the girl going to rehab .... it is all good. I am blessed to live this life and I am blessed to be the mom of two amazing girls.

May you all have a blessed day and live every second of it to the fullest!

Susan